[Don’t miss part 1 of this interview ]

Tina: This protocol is entirely different than the Infectious Diseases Society of America treatment guidelines, which recommend only 200 mg of Doxycycline with the fulfillment of some absolutely ludicrous attachment and endemic criteria. I would take your treatment over theirs any day.

Dr. Susser: Yes, they're really out of touch, really out of touch. The Infectious Diseases Society of America has been accused of having conflicts of interest. The IDSA panel made the announcement that chronic Lyme disease doesn't really exist, and it turns out they probably had financial interests with insurance companies. The Attorney General of Connecticut brought charges against them.

My approach to patients is one of partnership in helping with their diseases. I am the junior partner; the patient is in charge. I will be the best advisor I can possibly be. I will offer options because most of the things that I do don't have rigid protocols. Like the old days--strep throat, ten days of penicillin or pyelonephritis, seven days of Keflex. There are a lot of rigid protocols in medicine and most of the things I work with are conditions like chronic fatigue syndrome, which is one that falls through the cracks. It was mostly considered to be an emotional disorder or depression. I'd say that if you had your life taken away by an illness, wouldn't you be depressed?

So, this book I wrote twenty years ago on Chronic Fatigue Syndrome is still valid in many ways, because the principles contained within it are what I apply to my patient approach. I look at all the possibilities and offer what certainty I can to patients. One of my strengths in medicine is that I'm willing to live with uncertainty and most doctors are not.

For example, one thing that I know is that something caused your disease, but I don't know what it is. It has to be in some category or another-a bacteria or a toxin or allergy. So, I take the most likely possibility and design a good safe therapeutic trial and do that. Now, with Lyme, the testing has recently given us much more certainty, with Igenex Lab and tests like the CD57. There are a number of things that give us much more information about Lyme.

So, I had a patient just today who had her tick bite twenty-some years ago, with a bull's eye rash and everything, and she's probably been to fifteen doctors, none of whom would believe she has Lyme. She has Lyme tests from labs that don't do well with Lyme and they came back equivocal or negative, so she didn't have Lyme by any standard for all these years. Yet, she has all the classic signs of Lyme-myalgia, arthralgia, brain fog, classical rash in New York, and her mother recognized it. She has Lyme clinically. In two weeks, if the testing comes back positive, there's a ninety-nine percent chance she has Lyme. I say that, just from her clinical history, there is a ninety-nine percent chance she has Lyme, no matter what the test shows. She's been sick all these years.

I even use the principals of Thomas McPherson Brown, who was the great rheumatologist at George Washington University Medical School. He discovered that he could cure sixty percent of his rheumatoid arthritis patients by giving them minocycline, an antibiotic, for ten months. He found Chlamydia in the joints of rheumatoid arthritis patients, which is a bacterium. He didn't know anything about nutrition or probiotics and he was a major player in conventional medicine. He published in peer reviewed journals and, not only that, he was in Washington, D.C. and was the rheumatologist for three different presidents in White House. This guy was big time and he was ignored by conventional medicine. It's one thing if they ignore me here in my little office, but to ignore Thomas McPherson Brown is really insane. I now have seen many patients who came to me with a diagnosis of rheumatoid arthritis; I discovered Lyme and treated them successfully - no more rheumatoid arthritis!

Tina: Have you ever treated a patient who presented with a bull's eye rash?

Dr. Susser: Yes, and I treated the patient for three weeks, and they never got Lyme. And, of course, the earlier the diagnosis, the easier it is to treat.

Tina: Are you finding Lyme cases here in Arizona?

Dr. Susser: I treat patients who acquired Lyme in other states, and I have patients who travel from northern California, Utah, New Mexico and Florida. As for Arizona, absolutely, quite a few. Most of them have been around for a long time, months or even years. I've seen acute cases, but curiously enough, not with a tick bite. There are other insects that might carry it, maybe fleas, mites, mosquitoes or houseflies. There are definitely more mammals than deer who carry it, like mice and squirrels and rabbits. And I know horses and dogs can get it, too. So, there are many animals that carry Lyme and it's getting more and more prevalent. At the same time, we don't have any really good answers for it. The antibiotics are a poor answer for it, but at least if you catch it early, it can work very well. 

CFS is another disease that slips through the cracks. It was first named by Paul Cheney and Dan Peterson in Incline Village, Nevada. They had a flu epidemic and some of the people remained sick. That was the time when the Epstein Barr test first became available on the clinical market. All these people began testing positive for Epstein Barr and they decided it was an Epstein Barr epidemic, which it turned out not to be. It turns out that Epstein Barr, which is Human Herpes Virus 4, is in all of us and when you get a serious illness, the HHV4 virus flares.

That led to confusion between Epstein Barr and CFS. When they found out that CFS was not caused by EBV, they decided it was an emotional disease and a form of depression. It was a crippling disease and in some cases it probably was Lyme. The definition of CFS is fifty percent debility for greater than six months with no known cause. It also has other symptoms like muscle pain, joint pain and swollen glands. So, myalgia was a common accompaniment.

In my book that I wrote with Michael Rosenbaum, called Solving the Puzzle of Chronic Fatigue Syndrome, I came up with the idea of Mixed Infection Syndrome. Again, the wisdom of conventional medicine is that you can only have one infection at a time until you're dying, and then you can have all these opportunistic infections that take hold. In my opinion, "opportunistic" is a redundant word, because all infections are opportunistic. They look for the opportunity to invade. What they mean is that an infection needs a real strong opportunity.

We are constantly besieged with bacteria and various organisms in the body. There are five hundred different bacteria that live in the gut. There are hundreds that live in the mouth, live under our fingernails and live on the skin. So, we have many different bacteria. The total count in the gut is variable. Some people say it's three trillion and some people say it's much more than that. How do you count them; it's hard. 

The point is that in CFS as a diagnosis, it will disappear when we are smart enough to diagnose all the different infections and all the different toxicities that can cause chronic fatigue. Lyme is a perfect example. Lots of these people we've labeled with CFS have Lyme disease. When we discover the Lyme disease, it's no longer CFS; it's chronic fatigue from Lyme disease. If they also have Babesia or some other co-infection, it's Mixed Infection Syndrome. They commonly have been on antibiotics for one reason or another and get an overgrowth of yeast in the gut. Then they have some sort of fungal or yeast infection. Then that opens the door to parasites and to other forms of bacteria that can invade, such as clostridium dificile and things of that nature. So, there are a number of organisms that will invade under these circumstances, and the patient is not terminal. The immune system is not totally collapsed. It's just collapsed enough. Then there are confounding factors like toxic metals and toxic fungus and molds in the house. One good thing about Lyme and the co-infections is that they validate my theory from twenty years ago that we get mixed infections.

A leaky roof or a leaky water pipe will lead to black mold, one of which is Stachybotrys. Stachybotrys toxins can be crippling and can lead to chronic fatigue and immune system depletion. Then the yeast, bacteria and parasites can invade. So, I would consider all these things in a patient with CFS symptoms, but not necessarily test for all of them. When you start testing for all these things, you run out of blood and money pretty quick. If I tested for all the things that are possible, I could drain somebody's bank account and their whole vascular system. Therefore, I use my best clinical judgment, and I have a lot of experience doing that.

Tina: What would you say is the difference between Chronic Fatigue and Fibromyalgia?

Dr. Susser: Aside from the fact that they commonly occur together, it is a case of which came first-the chicken or the egg-fibromyalgia means muscle pain and chronic fatigue is just that, chronic fatigue. You can have one without the other, but they commonly occur together. Fibromyalgia is fatiguing, and some people start off with fatigue and the fibromyalgia follows. 

Now when it comes to Bb infections, the most important recommendation I have is to be really aggressive. I use a pincers approach. By that, I mean if you just use antibiotics and don't boost the immune system, you won't see a complete cure. If you just strengthen the immune system, it's almost never enough. I've never seen a serious case of Lyme get better without antibiotics, and I've tried. The important thing with Lyme is to recognize that the Lyme organism metamorphosizes. The Lyme organism starts off as a spirochete, a strong cell-wall organism, and it's hard to see under a microscope. It's long enough to be seen, but it's very thin. So, in order to see it under a microscope, you almost need to use a darkfield or lightfield microscope.

When you treat it with antibiotics, you start off with an antibiotic that kills the cell wall. The organism will start to die, but it's a slow-growing organism. Most organisms with which we get infected are like E-coli, streptococcus, staphylococcus, pneumococcus and gonococcus, and they're fast-growing organisms. They divide every twenty minutes when they're infecting, so you get three generations in an hour. They are very vulnerable to antibiotics. Lyme, on the other hand, divides every twenty hours. Therefore, it's much harder to kill. Its metabolism is much slower and deliberate.

If you get chronic Lyme, you can understand that instead of taking ten days to treat it, it can take ten months or more due to its slow replication. When you combine that with the fact that it's intracellular and it hides very well from the immune system, hides from antibiotics, and metamorphosizes from a cell-wall phase to an L form, which is a form that does not have a cell wall, it becomes much more difficult to treat. There are also the cyst form and the granular forms which are resistant to most treatment and can remain dormant for years.

There are antibiotics that attack the protoplasm rather than the cell wall. They don't work as well on the cell-wall form, during early Lyme, but somewhere around three weeks of azithromycin or clarithromycin (antibiotics we like to use on Lyme), the cell-wall form will metamorphosize. At first you may notice that you'll start feeling better, and after about three weeks, you may stop getting better. So, then you add Doxycycline, and you continue both of them because the forms keep shifting back and forth. At the same time, you may be ignoring Babesia, which you may have if you haven't checked for that. Even if you have checked for that, there are false negatives. 

That's why a doctor has to use clinical judgment. So, I often add Plaquenil, Metronidazole or some other parasitic drug, which can hit Babesia. Babesia is like malaria; it's a parasite. There are a lot of herbals and nutritional boosters for the immune system. There's a whole program I use including CoQ10, D-Ribose, L-Carnitine and Carnisine, una de gato (cat's claw), and Artemisia. I like colostrum and sometimes colloidal silver and oral chelating agents. So, there are a number of things you can use, and it sometimes taxes the imagination to be able to prioritize. I can think of three hundred things that I could do, but I have to prioritize each case and find the best thing for that person that is possible at that time.

Tina: That's so wonderful that you have that individualized approach. From a patient's perspective, it's so important that, after seeing so many other doctors, to eventually find someone like you, Dr. Susser, who will work with a person. Perhaps you have already witnessed this in Lyme patients-that is, a bit of anxiety.

Dr. Susser: Oh, yes! I've had patients who just burst into tears because someone finally believed them! 

Tina: Do you have any suggestions for other medical practitioners?

Dr. Susser: Be open to the possibility. One thing about Lyme is to never get cocky about it. Don't ever get overly confident that you've reached a cure just because somebody starts feeling better for a while. I've seen a lot of relapses when people quit too soon. That has to do with this twenty-hour replication rate and also with the idea that Lyme is intracellular and hides from the immune system. Remember that it can go into a cyst or granular form. It can become dormant. There are a lot of other diseases that are like that. Tuberculosis is like that.

Tina: Why won't the medical community accept that Lyme is like tuberculosis in its ability to evade and lie dormant?

Dr. Susser: I don't know. There is lots of evidence to show Lyme's ability to lay dormant. Tuberculosis takes up to a year and a half to treat. When you first catch tuberculosis, it may only seem like a mild flu. It doesn't necessarily cause a serious illness, and it leaves a little calcified nodule in the lung that has live tuberculosis organisms in it that are dormant.

When you get older, maybe 50 to 70 years old, you get pneumonia, cancer or some debilitating condition like alcoholism, the tubercle breaks down and you get tuberculosis. You then get a cavitation in your lung and a terrible disease, but it's something you caught fifty years before. So, why would it be a surprise that other bugs can do something like that?

An astounding aside to this conversation is that about hundreds of millions of people worldwide are infected with dormant tuberculosis.

Tina: Have you observed an AIDS type syndrome develop from Lyme disease infection?

Dr. Susser: I haven't yet seen anyone with Lyme as bad as terminal AIDS. I've seen some people who are pretty sick, but not with AIDS. AIDS is really dreadful. I used to see a lot of AIDS before the protease inhibitors were made available. These drugs suppress some of the action of the virus and they sure have prolonged a lot of lives and improved quality of life. I hardly see AIDS patients anymore.

There are some people that say that HIV has nothing to do with AIDS, and I don't believe that for a second. I think there's a very strong correlation from everything I've seen. I haven't seen anyone with AIDS that didn't have a positive HIV. Everyone with HIV starts getting the immune system changes and if you do a T-cell subset, you see a lowering of the helper cells and an increase of the suppressor cells. When the ratio gets very low, the infections get very bad. 

I saw one young man die very quickly when he got pneumonia. He needed to be hospitalized, so I sent him to UCLA, but he didn't get there in time. They started treating him, but he died very quickly. Every patient I've seen who had lethal AIDS had a positive HIV. Then I started seeing the ones with lethal AIDS start turning around with protease inhibitors, but most of them go to infectious disease doctors who specialize in protease inhibitors

Tina: What is your take on the political aspect of Lyme disease?

Dr. Susser: Be politically active. I don't know who's politically active in fighting people like the IDSA. They're very powerful, but ultimately, everything winds up political. I have a saying: "If you tell the truth and keep telling it, eventually, your word becomes the law of the universe."
When it comes to health, be proactive. The more proactive a patient is with their health, the better they do, in my experience. People often come to me quite sheepish and apologetic. They say, "I looked this up on the Internet and I don't want to tell you how to be a doctor and I don't want to pretend I'm a doctor and such." This is all nonsense. Patients don't have to be apologetic for learning. Information is information and knowledge is knowledge. The important thing is to find somebody who can help you use that knowledge, because nobody is going to get enough knowledge to deal with it themselves.

For example, I could go to a lumber yard and buy everything I need to build a house. If I built that house, I don't think anybody would want to step in it. I'm not going to be the one to build a house that you could live in or even survive in for a moment. But people learn enough to buy vitamins and sometimes drugs and do a lot of things for themselves, but they can also damage themselves that way.

I have people who bring me lots of good information and I use it. I remember reading about Sir William Osler; he was the modern Hippocrates, the idol of medicine around the turn of the last century. He was a brilliant clinician and people really listened to him and followed his teachings. He had a lot of sayings like Hippocrates. One of the things that he said that always stuck in my mind was, "Listen to the patient. He will tell you what's wrong with him."

So, I consider that one of the most important things I ever learned in medicine. It's one thing to hear the words and another thing to hear the meaning. I'm very careful to listen to the meaning and to hear everything the patient says. A lot of doctors will just jump from the superficial finding to this, this and this and seven minutes later they're done. You can't do Lyme in seven minutes. I can treat an earache in seven minutes and tonsillitis in seven minutes, but that's not really treating the whole situation. Sometimes you need to set up the immune system and nutritional system and find out whether it's the first tonsillitis they've ever had. I can run people through and do an “augensblick diagnosis” - that's German for “blink.”

I can do that, but it's not very satisfying and it's not very safe. You can miss some really important things if you don't take a little more time and dig a little deeper. If people are frustrated and have a hunch that their doctor isn't looking deeply enough or hearing them well enough, change doctors. Also change doctors if a doctor doesn't want you to have another opinion. If you're not getting well and your doctor doesn't want you to have another opinion, then you need another opinion. At least that's my feeling.